Mysterious shortness of breath: What has helped you?

Posted by Gabe, Volunteer Mentor @gabrielm, May 31, 2018

I will try to make this as short as possible, but this has been going on for over 5 years, so it might be farily long.

Beginning in summer of 2012, I began having shortness of breath (SOB) with no other symptoms. I felt a constant need to yawn, and every few breaths wouldn't satisfy the SOB. I would take a deep breath, and felt like it would get "stuck" before satisfying the air hunger feeling. About every 3-5 deep breaths would satisfy it, only for it to return a minute later.

I got an endoscopy and other tests done, which revealed that I had some esophageal erosion due to acid reflux and a slight hiatal hernia and was diagnosed with GERD. I had always have bad heartburn, so I was prescribed with Prilosec, which I have been taking daily since them. I've tried stopping it a few times but the reflux always comes back a lot worse.

Lung tests and x-rays were normal. Heart tests normal. Blood test revealed a slight anemia but otherwise pretty normal.

I did some research reading forums where someone suggested taking vitamin B-12. Strangely, I took it and the SOB disappeared almost instantly. However, it only lasted a few days for it to return just as bad. I then started taking an iron supplement, which again made the SOB disappear quickly- same thing; symptom returned days later.

After further research, I came across a breathing exercise method called the Buteyko method. Essentially you do a lot of breath holding to build up CO2 and reduce breathing as the theory is that I had chronic hyperventilation causing too much CO2 to exit my body. After applying the method and reducing my breathing, the SOB disappeared after only 2 days and I felt completely normal. I continued the method a few more days then no longer felt the need to pursue the exercises. I was normal for a whole year when the SOB once again returned with some chest tightness. I applied the method again and the symptom went away, this time with a little more effort; after about 3 weeks. I included physical exercise which also helped with my breathing.

After that, I was normal for about 2 years. I mistakenly stopped or at least slowed down exercise and the SOB returned once again. I applied the method and began running for exercise but the SOB kept getting worse. It got so bad, I had multiple panic attacks and the feeling of completely empty lungs with the inability to satisfy it with deep breaths. I had to stop exercise altogether, apply the Buteyko method and do breathing exercises very carefully with very light and slow exercise. This helped, but it took many weeks for the SOB to improve. Then, it was almost normal when over a year ago as I was running, I couldn't get a deep breath to satisfy exercise-induced SOB. I have had SOB continuously since then (a year and a half).

I once again started doing breathing exercises and slowly building up physical exercise, but I can't do any prolonged cardio activity because the SOB gets to a point where deep breathing will not satisfy it. While the breathing exercises have helped, they have had very little effect compared to previous efforts. It seems that every time the symptom returned, greater effort yields few results.

I suspect there is something, some underlying cause that is causing the SOB that has alluded me this entire time.

So for the past few months to a year, the SOB is worse on some days, better on others, but never gone. There's no rhyme or reason or pattern for it. It's just there, sometimes affecting my sleep. I sometimes can't get a deep breath to satisfy it every now and then, but for the most part, a big gulp of air will satisfy it. But it returns seconds to minutes later. It's as though every breath doesn't deliver what it's supposed to, the SOB builds up, and then I have to take a big gulp of air to get rid of the feeling, pattern repeats. My breathing pattern is normal, however. I don't feel like anything physical is happening, but sometimes it feels like my airways and nostrils are slightly inflamed due to allergies, but when I don't feel inflammation the SOB is still there.

Recent lung function tests show normal- I don't have asthma, or any other problems with my lungs. Heart tests are normal though I did have about a two week bout of heart palpitations which came and went. Haven't had any for a while- it just mysteriously started happening then stopped. Blood tests are normal, though tests always show a slight elevation of biliruben which my doc thinks is Gilbert's disease.

I don't have sleep apnea (normal test), bloody oxygenation is normal, heart rate normal.

I recently saw local naturopath (since mainstream docs aren't able to help) who immediately suspected a liver problem when I described my SOB, possibly liver inflammation. He used an electrodermal testing machine to test his theory which did seem to show a problem with my liver and gallbladder. He gave me digestive enzymes and a gallbladder formula to help clear a bile duct clog, thus reducing liver inflammation. He also determined with the machine that I have an egg sensitivity so I've been avoiding eggs.

Been taking this and avoiding eggs for a couple of months, but there has been no noticeable improvement. Everything else is normal. Emotionally I'm normal- no anxiety, depression, etc. The SOB seems to be the only symptom of something, but always comes back worse, until a year and half ago when it came back and has remained since. I feel like I shouldn't have to do breath holding exercises every day just to maintain my breathing well enough to do every day things.

Does anyone have any idea of a possible underlying cause?

2021/2022 UPDATE:
Since my original post about 3-1/2 years ago, a lot has happened, so I’d like to update the post to share with others who come across this what I’ve done since then.

I have maintained a weekly Buteyko method breathing exercise regimen where I do a few of these breathing exercises 3-4 times a week in the morning. This, in combination with daily light to moderate exercise (specifically weight lifting, with 1 or 2 days a week of walking and light jogging), I feel has kept the air hunger symptoms tolerable and manageable. I have mostly good days with some not-so-good days, but doing a breathing exercise and knowing that it’ll get better again helps me get through those times.

I also have sinus inflammation which can exacerbate the symptoms, but I’ve also managed this, which in turn reduces the severity of the air hunger symptoms.

So, while I haven’t found a cure nor is the problem completely gone, I have been able to maintain normalcy in daily life and manage the symptoms through the strategies I described.

This discussion remains active, alive and well through the comments section where others who have similar symptoms have shared what has helped them as well as suggestions for possible solutions to explore.

Interested in more discussions like this? Go to the Lung Health Support Group.

helpnywhereucan | @helpnywhereucan | Feb 29, 2020

In reply to @merpreb "@palmtrez123 - One of my worst fears was having a bronchoscopy. Thankfully my GI guy puts..." + (show)

I'm not sure what it's called but I had the one where they go up your nose and down your throat done a couple times. Sucks but really isn't a big deal. Breathing and remaining calm got me through it. It's uncomfortable but I don't recall there being a lot of pain. They numbed my throat and nose with a topical and got busy. Come to think of it, that was the worst part.

kessme | @kessme | Feb 29, 2020

In reply to @helpnywhereucan "I'm not sure what it's called but I had the one where they go up your..." + (show)

Impedance Study

palmtrez123 | @palmtrez123 | Mar 1, 2020

In reply to @jenniferhunter "@palmtrez123 You may want to consider if a physical problem that could be interfering with breathing..." + (show)

@jenniferhunter

@palmtrez123 You may want to consider if a physical problem that could be interfering with breathing mechanics. I know this because I do this myself and start using my neck and upper chest muscles to breathe when I'm having trouble. I have thoracic outlet syndrome which affects my breathing and also allergies and asthma. Breathing like this causes anxiety.

You might want to have a physical therapy evaluation, and I would recommend a PT who also has the John Barnes myofascial release training. All the ribs and muscles need to be able to expand properly which creates a vacuum that allows the lungs to expand fully. If anything impairs movement of the rib cage, it can impair breathing. I do have asthma and thoracic outlet syndrome which causes neck and chest tightness under the collar bone where the nerves are passing on their way to the lungs. There are different nerves involved in breathing for the upper and lower parts of the lungs. I am also a cervical spine surgery patient, so I have some scar tissue near this area that will tighten if I don't keep working on it. I know I have a habit of sleeping on my right side, and my body is too tight on the left, so I have been reversing this to try to stretch out my tight left side. I think our habits can contribute to things like this. Physical therapy and MFR has helped me resolve some of these problems.

Thoracic outlet syndrome is more common than doctors think it is, and most doctors don't understand it because it isn't covered well in medical schools. Sometimes they don't consider a physical problem and how that might cause symptoms. It is worth asking a physical therapist about it, and tests for it will be Doppler imaging to see if the blood supply to the arms is cut off by raising the arm or with a change of head and neck position. Neurologists can diagnose it. Usually physical therapy is recommended for TOS. Doctors who understand it are usually at interdisciplinary medical centers like Mayo and it will be listed as a condition they treat. You might find that physical therapy will help even if you don't go through a lot of diagnosis. MFR works on tight muscle and tissue all over the body and once you learn how it works, you will be able to do a lot on your own at home. The therapist will be able to feel the tight pathways through your body.

Here are some links that may be of interest. I have also included our discussion on Myofascial Release that has a lot of information on where to find information and MFR therapists.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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Thank you Jennifer! I go to a chiropractor every week and I'll ask her if she knows someone in my area that specializes in MFR.

Jennifer, Volunteer Mentor | @jenniferhunter | Mar 2, 2020

In reply to @palmtrez123 "Thank you Jennifer! I go to a chiropractor every week and I'll ask her if she..." + (show)

@palmtrez123 Here is a link with a provide search for MFR therapists. Not all PTs are knowledgeable in this method unless they ave trained with John Barnes and his group. If you don't find someone near you, you can also call Therapy on the Rocks in Sedona, AZ and ask if there are therapists in your area that have trained there. They have to pay for a website listing, and not everyone does that. They may also be physical therapists who specialize in breathing problems. Good luck, I hope you find what you need.
http://mfrtherapists.com/
http://therapyontherocks.net/

palmtrez123 | @palmtrez123 | Mar 3, 2020

In reply to @jenniferhunter "@palmtrez123 Here is a link with a provide search for MFR therapists. Not all PTs are..." + (show)

Hi Jennifer! I checked John Barnes' site and they had a few in my area. I found one that had many good reviews and made an appointment with her for this Friday. I'm so looking forward to it. Thank you so much for the information!

Abdul | @myaccount17 | Mar 3, 2020

Hi friends, I think the problem for shortness of breath is diaphragmatic eventration. Check chest xray and can find out if there is eventration. Need surgery to make the diaphragm down again. If it raise, your lungs wont have space for lungs to expand, then you will have SOB.

kessme | @kessme | Mar 3, 2020

It has been years since I've been to the doctor. I pretty much have given up. They have taken xrays, but have never seen anything. Mostly because it always seems that my symptoms aren't as bad by the time I can actually get in to see someone. All of my PFT'S have come back great. I have always complained that I think it's my diaphragm, but not one doctor has ever shown concerns. My biggest problem is getting in to someone when my symptoms have peaked. I usually have to wait several weeks to get into my primary physician and by then there is no guarantee I'll be symptomatic. That is why they treat me like it's psychological. My best description for them is that I feel like a pregnant woman with the baby high up in my belly and won't move to let my lungs expand fully.

kessme | @kessme | Mar 3, 2020

Thank you for the information! I feel you understand what is going on. I just would like a doctor to listen to how I know my body feels.

Abdul | @myaccount17 | Mar 3, 2020

In reply to @steveso "I recently discovered this group while trying to finds a reason /cure for my breathing problems...." + (show)

@steveso

I recently discovered this group while trying to finds a reason /cure for my breathing problems. I have some of the same symptoms described by people posting here. I have been suffering from this condition for about 14 years now. I become short of breath while exercising. I cannot ride a bicycle or enjoy hiking because of my inability to breathe. I cannot even leisurely walk in the woods without having to stop and catch my breath. I become short of breath using the stairs. I can't do anything outside once the sun begins to set, and forget doing something outside after dark. I have certain days where I have the feeling that I have to keep taking a deep breath, which sometimes I can't complete. At the same time I have to yawn constantly to get a deep breath. Half the time I can't complete the yawn. This problem almost always with a change of weather. I have had chronic sinusitis for 15 years and when my sinuses begin to drain, my sinuses swell, my nasal passages swell, my teeth hurt, my eyes feel like they are popping out of my head and my entire face hurts. This is when I have this air hunger. Nothing relieves it! When the weather system passes, it gets better.

I have been to pulmonologists, allergists, asthma specialists, cardiologists, ENT's, gastroenterologists and even speech pathologists in Boston, Rochester, NY and even in Penang, Malaysia. Some have said I had asthma. Some have said I have COPD and others say they simply don't know. I have been prescribed every known inhaler and nasal spray on the market. I've tried special diets, yoga and special exercises. Nothing has helped. I have been tested for allergies and came up negative. I've had sinus surgery, which did nothing for me. I've tried acupuncture, which didn't help. I'm sick and tired of being seen by specialists and telling my story over and over only to have them prescribe the same damn inhalers or other medication that I have tried without effect. Some of these inhalers cost 3 or 4 hundred dollars each, only to offer no help.

I am at the point now where I realize modern medicine cannot do anything for me. But I keep researching, looking for answers. This is what led me to this site. I know nothing will help, but I felt the need to vent. Thanks for allowing me to rant.

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Please check your diaphragm. Seems diaphragmatic eventration. Check chest xray to find eventration of diaphragm

Abdul | @myaccount17 | Mar 3, 2020

In reply to @nycmom "Hello everyone--I'm still experiencing shortness of breath. I did start lexapro 8 weeks ago, out of..." + (show)

Please check your diaphragm. Maybe diaphragmatic eventration....

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